October 4 2016:
Lillian wrote a play this time! Go Lillian!! Check it out! xoxo
“Hey, everyone! This play will help you learn about the history of art. For those who like art will probably be interested in the history of art. You can use this play for school and other educational uses if you want to.
Narrator: Welcome to History of Art! Let the play begin.
July 21 2016:
Lillian got inspired by a drawing she created yesterday …. This is an incredible story and looks like it will be the story of how Mr. Happy Tree came to be.
Lillian drew a tree last summer that we named Mr. Happy Tree and I told her he is going to be a great book character … The 2nd picture is Mr Happy Tree from last summer. Hope you enjoy …
“One day, a bird picked up a seed to eat. A few minutes later, the bird decided that it wasn’t the right seed. The bird threw it back down. That was the beginning of the Happy World.
As the years past, the tree grew until it had several branches and a strong trunk. The strong tree became known as the Happy Tree. The Happy Tree decided to produce a seed. The seed grew with happiness and love. One day, the seed blossomed into a young beautiful tree that didn’t grow much after that point.” Go here to read the rest … https://lilliandarnell.com/2016/07/20/a-happy-world/
Blessings,
Thomas, Lillian and Camilla = Team TLC
See It. Share It. BE IT … Spread Love Everywhere You Go!
Wonderfully exciting news! We’ve completed the first book trailer for Thomas’ upcoming book, Biggest Little Photographer. You can learn more and pre-order here.
July 20 2016:
We shared with Lillian’s physical therapist on Wednesday, the 20th, the pictures of her using the stairs and also about one other achievement she met while on this trip. Jillian, her therapist, got goose bumps! This is good stuff!
YES!! There’s another one that was accomplished. It’s a personal and private achievement … Just know, she did it! Took 14 and a half years, yet she did it!!! Wahooooo!! We are happy to share with any other C18 parents (or other special needs parents) … Just comment here or message me. YAY, WAHOO, and Let’s celebrate!! xoxo
I double checked with Lillian’s PT for the accurate names of what she’s been working on with Lillian for the past year … Straight from her: We have been working on integrating Fear Paralysis Reflex, Moro Reflex, Galant Reflex and Tonic Labyrinthine Reflex and Body Mapping. … xoxo
Joy in the Journey …. Moments of Loving-Kindness During the 2016 Chromosome 18 Conference ….
Beautiful and Meaningful Bracelet
…. Then there was the mom who gave me this bracelet and said, “Y’all bust your butts to get here every year, and I want you to have this. I love you and your kids. I thought of you as I was making it.” This caused my eyes to sweat …. xoxoxoxo
Offered a Place to Stay + Embarrassing Moment for Me
I did not plan the driving part of our trip, except for the route we would take. I had decided that I would just drive until I was tired or about 7 or 8 hours and just get a room wherever we were at that point.
When we reached Las Vegas I thought we might make it to the Phoenix area. So I sent a text to an 18p- Mom friend who lives in the area as she had said to let them know if we are stopping there for the night.
After we left Vegas, I had no reception until we reached Surprise, Arizona which is on the outskirts of Phoenix. As I was inquiring about a room, all of her texts and messages came through on my phone (that had not come through over the past 5 hours).
She and her husband have a standing room at a Scottsdale hotel and offered to let us use it. I was so wasted and absolutely could not make a sound decision at that point as I had been driving since 7:00 am and it was about 9:15 pm.
I didn’t think I could figure out how to get there in the dark and Thomas and Lillian were so tired. It would have been 45 minutes without taking any wrong turns so I decided to take the room where we were.
I am incredibly grateful to them for offering and for texting and talking with me in my delirious state only to have me not take them up on their wonderful offer. I was quite embarrassed with myself … 😉 ….
After we were in our room, we received 2 more offers for a place for us to stay the night (which could be used on our way back through). One in Surprise, Arizona and one in Yarnell, Arizona.
National Parks Employee
There was the National Parks employee at Lake Mead … I saw that it would cost $20 for us to enter the park and drive down to the lake. I also knew we would only last about 15 – 20 minutes since Lillian has a tendency to overheat .. Big time.
Overheating so badly that she throws up for an hour. So, I explained about Lillian and she said .. “You want to go ahead and get her a lifetime pass and you can enter all national parks for free.” …. xoxoxo
Ticket Gifted for Ladies Night
The moment we arrived in San Antonio I had a message from another 18p- Mom that she was looking forward to seeing me and had bought my ticket for ladies night. She didn’t want me to miss out and wanted me to have a night out with the other moms. I had not planned on going due to the costs and had not shared that with anyone. xoxoxo
Duct Tape
Before we left I asked the hotel if they had any duct tape. And what do you know .. they had the engineering/electrical department bring some up to the room! Wonder if they’ve ever had that request? I had to make a little Rosey repair before we headed out. xoxoxo
Hotel Manager Kindness
Before the hotel ran the charge for the entire stay on my debit card, I forgot to tell them that we’d be checking out a day earlier than planned. They also added in $40 a day for incidentals. We were on this trip on a very tight budget, so I needed that extra night reversed and not to be charged the $40 incidentals.
The manager on duty went way out of her way to correct the charge. It took us two days but she got it reversed so we could run the lower amount through and they did not charge me the $40 per day incidentals.
In talking with her about parking and how I had looked online for less expensive parking while there (cost $40/day for the hotel parking), she shared with me how I could park for free for our entire stay .. just steps outside the front door of the hotel. xoxoxo
Painted Rocks
There was the mom who asked about commissioning Thomas to paint 10 rocks for her so that she can give them as “thank you” gifts. Thomas is so excited and he will save most of the money for conference next year. He’s finished the first one .. a shell with pearls on the backside! He wants to create seasonal themes. xoxoxo
Chatting and Veggies
During the ladies night dinner, I had a pounding headache. I rarely get headaches but something I ate at lunch didn’t agree with me. A beautiful and amazing 18p- mom sitting across from me, noticed my distress, and invited me outside onto the patio.
It was extremely loud in the room we were using due to all of our voices echoing and that was doing a number on my head! We stood outside and admired the river and chatted and took pictures. Later she ordered a plate of steamed veggies and shared half with me as everything except the rice had meat in it.
Here’s hoping you find the Joy in Your Journey. It’s there. Trust me. It is.
The trip back from the C18 Conference – Quick stops on Saturday at Lake Mead and Hoover Dam … We will definitely go back for another visit when it’s not so hot and we are able to take our time. So incredibly beautiful!
So incredibly beautiful!! – Have Thomas takes pictures and he takes 20 at one time! He takes pictures all the way up til I walk over and take the camera away. So … Bonus, blooper picture! It was hot, hot, hot so had to have all that hair off of me!
July 14 2016:
Here are some beautiful people I’m deliriously in love with!!! I am incredibly blessed and thrilled we got to meet face to face and have so many chats Heidi Hulspas!!!!! And please tell Sahara that I will never forget the hugs she shared with me!!!!
So happy to see you Marianna Kuortti!!! Thank you for being you! xoxo …. Plus, a picture of the great schedule for the conference!!
Farewell dance and dinner … The Starfish Gala … Lillian Darnell and some of her friends. Lillian loves her friend Katie and loves staying in touch with Rebecca Parker all throughout the year.
Lillian has a speech impediment and struggles with articulation. Guess what? When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.
In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.
Thomas as well. Thomas is unique in his own way and by way of having Lillian as a sibling. He gets to share with other siblings and gets to be mentored by older siblings who have traveled his path. These people are his friends too and every year their friendships deepen. He gets to be amongst others who have long ago released judgments of others. xoxox
Why the Starfish for the Chromosome 18 symbol? This …
The Starfish Story
A young man is walking along the ocean and
sees a beach on which thousands and thousands
of starfish have washed ashore. Further along
he sees an old man, walking slowly and
stooping often, picking up one starfish after
another and tossing each one gently into the
ocean.
“Why are you throwing starfish into the
ocean?,” he asks.
“Because the sun is up and the tide is going out
and if I don’t throw them further in they will
die.”
“But, old man, don’t you realize there are miles
and miles of beach and starfish all along it!
You can’t possibly save them all, you can’t even
save one-tenth of them. In fact, even if you
work all day, your efforts won’t make any
difference at all.”
The old man listened calmly and then bent
down to pick up another starfish and threw it
into the sea. “It made a difference to that one.”
Thanks Missy Baker, Marie McGing, Nora Schaefer, Heidi Hulspus, and Natalie Abreuhorne for sharing your pictures with me!!
(This is part two of The 2016 C18 Conference Journey. Go here for part one.)
July 10 2016:
The one who says to me as we’re driving through the amazing rock formations after going through the Boulder Dam area … “I always have deja vu, like I’ve lived this life before. He said it all seems so familiar.” … and when we encountered some difficulties on the trip down … “When you get a rock in your shoe, just shake it out” ….. I deeply love this little human … Thomas Darnell …. xoxo
July 12 2016:
Took a much needed walk this morning. Feeling so out of place here. This was exactly what I needed. Felt like a massage … So relaxing, refreshing, and inspiring. I love nature. xoxo
